Elizabeth E. - My Mother, My Best Friend

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My mother was diagnosed over 3 years ago. She had other health issues that either helped the process along or were the cause of her final passing this last April. Like most she died from pneumonia, respiratory failure. When I was a teenager, as most daughters do at that age, I fought with my mother constantly. When I became a parent myself, we grew to be best friends. We did everything together and shared everything. The day my mother died from this horrible disease was both happy and sad. Happy that she was no longer trapped in a mind that confused and frightened her. Sad that my world suddenly grew so small.

It started when she came to live with us. One morning she got up at 5am and wandered off down the street. She walked into a neighbor’s house a few streets over that did not know us. I called the police and they found her. I had to take my power of attorney and proof of who I was, because mom didn't recognized me and she told them I had kidnapped her. I wasn't sure how to process what was happening. You get the knowing glances from people around you, and the "I'm so sorrys." I had to let my husband and brother get her home so as not to further upset her. Shortly after, she was diagnosed.

It was a long 3 years of loving her and fighting side by side with her as she fought Alzheimer’s. I kept her home with me as she did not have any long term care insurance. Medicare is the only one who covers Alzheimer’s. I fought with them constantly over the care she received. Filed complaints with Medicare over Kaiser Care. Took classes to do her cumiden blood tests at home when she could no longer travel to the hospital. Fought to get in home care.

You really need an advocate with this disease, since you cannot effectively communicate what's happening to those family members that care. I was not comfortable with the few nursing homes available with all their bad reviews. I chose to keep her home with us where I knew she would be safe. I read books, talked to people, researched drug protocols. This is an all consuming disease that touches every part of your life whether it is you who has it or someone you love. There are very little resources out there because there are already so many who have this disease and no finances to take care of it. People wondered why my reaction to mom's death wasn't more pronounced. It's because I watched her go down the rabbit hole little by little over 3 years.

I mourned her loss as we traveled this road together. There were days when for an hour or so first thing in the morning it was as if she was her old self again. And by afternoon that stark glazed look in her eyes would return. So at night after I put her to bed, I would cry because I missed her so much. There were days when she would suddenly look at me and tell me she loved me and was so sorry I had to take care of her. But I was never sorry. My goal was to make her feel safe. To be gentle and kind. To repeat and explain things as many times as necessary. To not get mad when she yelled at me, hit me or tried to bite me. I just kept loving her because I knew one day she would be gone and she was terrified. If not in body in spirit.

I loved my mother and it was an honor to take care of her. I worry now about whether I will get this horrible thing called Alzheimer’s. I don't think enough is done to find a cure, or that there is enough priority to setting up care facilities with staff properly trained to deal with these patients. This is a specialized field that takes a lot of patience and understanding. There should be more advocates. My mother is gone now and I miss my friend every day. I am glad she is now dancing in heaven and free from this Alzheimer’s. But the fight goes on for so many. We must do more on all fronts to combat this. Blessings to those of you who still walk the path.

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